Cure SPG52
Families

You are not the only one

Parents of 26 children with SPG52, in 12 countries, talk to each other every day. They compare notes on seizures and therapies, translate research for each other, and raise money for the same gene therapy. Here is how to find them.

The caregivers' WhatsApp group

A private group for parents and primary caregivers of children with SPG52, in English with members who help translate. It is run by families, for families. No clinicians, no companies, no fundraising pitches other than the families' own.

To protect the group, no phone numbers or invitation links are published. Fill in the form and a parent who administers the group will email you. The group is for caregivers of a child with a confirmed or suspected AP4S1 diagnosis; clinicians and researchers are welcome to write to us instead.

You do not need to share your child's name or medical history here.

Prefer email? Write to [email protected].

Where the children are

One dot per child, by country and age band, for the families who have come forward. No names, no cities. See the map.

Family foundations

Families in several countries have set up foundations or associations to fund the research, support newly diagnosed families and work with their national health systems. Each is listed here only once it has approved its listing.

Listings for foundations in Spain, Romania, Poland and Germany are being confirmed with each one. They will appear here as each approves its entry.

Also worth knowing

  • Cure AP-4 runs a caregiver community for all four AP-4 conditions and funds research across them. cureap4.org.
  • The Boston registry is remote, free and the place trial teams look first. Details on the first 90 days page.
  • Photos. This site publishes no photo of any child without the written consent of a parent or guardian. The consent text is on the photo consent page.